1. Health

Coping with Lupus? Join a Support Group - Or Start Your Own


Updated May 27, 2008

If you feel alone, like the only one who has to deal with the day-to-day issues of living with lupus, you might consider joining a support group to feel more connected to those that share your struggle.

A support group can be a gathering of family, friends, or persons with lupus or a combination of all three. Typically, the group gathers regularly to discuss issues surrounding their disease and provide mutual support and exchange coping skills. But the reasons people join support groups can vary greatly from individual to individual.

Some may look for a better understanding of their disease. Others will feel in crisis or are hoping for help with specific struggles – from caregiving to dealing with flares. They may be looking for advice on a particular subject or just want to be with people who are having similar experiences. The group provides that opportunity.

If you are interested in joining a support group, your first step might be to determine what is available in your area. You can do this a number of ways, including contacting your healthcare provider, contacting a local hospital and speaking with the patient advocate, or by using the Internet and other reference resources to determine what’s around.

If you discover that there isn’t a support group available, you might consider starting one. If you want to take on that challenge, here are some suggestions, tips and steps to get your group started and established.

Starting Your Own Support Group:

Starting a support group is challenging and requires a high level of commitment and responsibility, as it is up to you to get the group off the ground, recruit members, and organize meetings and events. Make sure you are ready for the responsibility.

Recruit Members:

So as to ease the work, find at least one other person who is just as dedicated as you are at making the group a success. Share the workload with that person. To find members in your area, consider reaching out to patient advocates, social workers familiar with lupus and lupus patients, physicians, counselors. You might also consider advertising your support group at the local library and other public arenas.

Plan, Plan, Plan:

Make sure, from the outset, that you want to be in charge of a support group and not just a member of a support group. More so, understand the reason why you want to start a group and what you hope your members will gain from gathering. Know what type of meeting will best meet your group’s needs – open discussion, social gatherings, formal speakers and programs, or a mix of all of the above?

Find a Place to Meet:

Not necessarily as hard as it sounds. Local libraries, government buildings, churches and schools might offer free meeting space. Healthcare facilities, like hospitals, might also be an option (and a source of speakers). Always keep accessibility in mind.

Time to Meet:

Your first meeting with your group will likely be a clerical one, as you and the members of you group get to know one another, discuss what your goals are, come up with a set date and time for future meetings, and determine what kind of structure you would like best (do you want a governing body, for example?).

Keep in Touch:

Make sure you communicate regularly with your members. One way to do this might be by through a newsletter, either via e-mail or printed out – depending, of course, on how big your group grows. For smaller groups, a note or e-mail that keeps everyone up-to-date and connected is probably the best policy.

Some Online Lupus Support Groups:

  1. About.com
  2. Health
  3. Lupus
  4. Living with Lupus
  5. Starting a Lupus Support Group – Support Groups for Lupus

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